The big issue: Missed, misunderstood and misdiagnosed
Therapy Today, November 2023

A my* self-medicated with cocaine and alcohol for 26 years while holding down a high-pressure job before she had a self-described breakdown at age 42. After mental health treatment at a private clinic, and subsequent sobriety, she was surprised to find herself ‘very dysregulated’ when she returned to work. The roots of her addiction – undiagnosed ADHD and autism – had been completely missed in the clinic. ‘Cocaine and amphetamine-based drugs can actually help a person with ADHD calm down and focus. Once I got clean, my self-medication had effectively been taken away, enhancing my ADHD traits,’ says Amy.

‘The psychiatrist who eventually diagnosed me believed I had remained undiagnosed for so long because I had found cocaine at an early age; I was also self-medicating to stop feeling so out of place. I only wish more treatment and rehab centres factored in screening to help identify neurodivergent residents at intake.'

Despite increasing numbers of individuals identifying as neurodivergent, there is still a surprising lack of awareness of the links between addiction, autism and coexisting ADHD – with potentially deadly consequences. Neurodivergent author and trainer David Gray-Hammond calls addiction the ‘silent killer’ of the autistic and neurodivergent community. ‘People with ADHD may die because of their drinking,’ he said in a powerful blog, ‘Killing them softly’.¹

Dr Mathias Luderer, a postdoctoral researcher at the University Hospital Frankfurt and Head of Addiction Services, agrees with Gray-Hammond’s stark premise of addiction catastrophically afflicting neurodivergent people. ‘In my patient group who have addiction and also ADHD, almost none of them received an ADHD diagnosis before they found themselves requiring help for their addiction. So if Gray-Hammond’s reference to “silent killer” means people with ADHD die because of their substance abuse without getting diagnosis and treatment, I agree,’ he says.

Statistics also show autistic people are still more likely to die by suicide than the general population.^2,3 ‘Many neurodivergent clients who overdose and self-injure have unhealthy relationships with drugs and/or alcohol,’ says Alice McCarron, a neurodivergent clinical practice lead for an NHS self-injury service. ‘Potential causative factors for suicidality in autistic individuals include coexisting mental health problems, late diagnosis, adverse life events, masking one’s true self in order to fit in, and sensory processing differences,’ she says.

The number of undiagnosed neurodivergent individuals in addiction is still unknown, but we do know there were 275,896 adults in contact with drug and alcohol services between April 2020 and March 2021.⁴ Given it is estimated that around one per cent of the population is autistic, and that 6.5% of the population has ADHD,⁵ we could estimate that 2,700 autistic individuals and just under 18,000 people with ADHD may be represented in the population served by drug and alcohol services.

Substance use-related problems have been observed in 19-30% of diagnosed autistic individuals in clinical settings. A landmark population-based study documented a doubled risk of alcohol and substance use-related problems among autistic adults when compared to the general population, and a further increased risk when autism co-occurs with ADHD.⁶ There’s said to be ‘significant genetic overlap’ with ADHD and alcohol use disorders (AUDs) – researchers have identified ‘frequent association’ between alcohol dependence and ADHD⁷ and pinpointed hyperactivity as a relevant symptom in ADHD and AUDs.⁸

Of course, these figures do not take into account that many neurodivergent people – potentially representing a sizeable chunk of addiction counsellors’ caseloads, as well as a number of those seeking therapy from non-specialist counsellors – may be unaware they are autistic or have ADHD, or that the demands of fitting into a neurotypical world are major drivers to self-medicate with substances and alcohol. For these reasons, it could be argued that every practitioner needs to be aware of the potential links between neurodivergence and substance abuse.

Hypotheses

There are several theories linking neurodivergence and addiction – an extremely simplified hypothesis is that people with ADHD have underactivity of dopamine in their brains. Dopamine characteristics are associated with reward valuation⁹ and people with ADHD can require higher levels of external stimulation and novelty to activate reward systems.¹⁰ As anticipation and consumption of reward are factors in addiction, individuals with dopamine dysfunction are potentially more at risk.¹¹ Meanwhile, anxiety and sensory overreactivity may drive the coping mechanisms of autistic individuals who experience substance misuse.

A recent scientific review found ‘significant genetic overlap’ with ADHD and AUDs:¹³ ‘ADHD drives negative experiences that enhance a genetically-increased risk for AUDs. As impulsive decisions and a maladaptive reward system make individuals with ADHD vulnerable for alcohol use, up to 43% develop an alcohol use disorder.’

The presence of untreated ADHD has been shown to negatively influence treatment outcomes for substance use disorder.¹² ‘Psychotherapy, especially in a group setting, is hard for someone with ADHD who is not on medication; treatment dropout is much more likely when ADHD is not treated,’ says Luderer, the author of the study.

According to Luderer, patients with ADHD and addiction rarely ask for diagnostic assessment. ‘They live with their brain and behaviour for their whole life. Even though ADHD is common in people with addiction, it is often overlooked by addiction professionals if routine screening is not carried out. Identification of ADHD in this client group can improve the probability of the patients benefitting from psychotherapy treatment – stimulant treatment helps them to focus on psychotherapy and reduces impulsivity and emotional dysregulation.’

Autism and addiction

It is thought that anxiety plays a big part in addiction in autistic individuals. Both formal studies and the lived experiences of autistic people tell us anxiety is coexistent to autism.¹⁴ It is also thought that the atypical structure of the brain’s amygdala (the region involved in emotions) seen in some studies of autistic individuals closely relates to anxiety.¹⁵ We know that the sensory overreactivity that autistic people are prone to also exacerbates anxiety.¹⁶ When sights, sounds and textures can feel overwhelming, it is natural that anxiety and overwhelm ensue. A recent study linked anxiety with atypical amygdala volume in autistic individuals; such individuals may be hypervigilant to the brain’s threat response.^17,18

Furthermore, growing evidence implicates the importance of healthy amygdala function in the mediation of the so-called stress-dampening properties of alcohol. Early studies, for example, proposed that faulty amygdala function can predispose individuals to both anxiety and alcoholism, finding excessive alcohol-drinking behaviour can mediate anxiety.¹⁹ It therefore makes sense that autistic individuals, already predisposed to anxiety due to sensory processing differences, may use substances to reduce anxious responses.

Diane Evans* is a neurotypical counsellor specialising in working with neurodivergent clients. She also volunteers as a counsellor at a residential alcohol and drug addiction rehabilitation centre. Evans is aware that very few clients in treatment for addiction at the rehab centre have a diagnosis of autism, despite this neurotype being overrepresented in percentage terms within addiction services as a whole, when compared with the wider percentage of adults using addiction services.

She agrees that anxiety is seemingly a major contributing factor for some neurodivergent clients facing addiction. ‘In clients who have a diagnosis, or may self-identify as neurodivergent, it is common to hear they have used substances to consciously manage their symptoms of anxiety. I also see a lot of trauma-type responses in this client group. In the few clients I see with diagnosed ADHD, it is not uncommon to hear that substances such as cocaine, cannabis, ketamine or alcohol have been used as a coping mechanism, especially in social settings,’ says Evans.

Social difficulties

Faye Lewis,* a neurodivergent art psychotherapist working within both young people’s support services and adult addiction, says social anxiety can be a causative factor for autistic individuals self-medicating with alcohol and substances. Lewis has experienced substance and alcohol misuse herself. ‘Being autistic and having ADHD played a big part in my personal experience of substance misuse – social difficulties, fluctuating moods, anxiety and depression, internalising shame, impulsivity, not talking about my problems, masking and subsequent exhaustion,’ she says Now sober, Lewis believes she had a psychological reliance on substance misuse, rather than physical dependence on drugs or alcohol. Her association with substance misuse began from a deep sense of loneliness around not fitting in with secondary school peers, teamed with the opportunity to drink, she says. ‘The combination of attachment difficulties, needing to feel validated through others, trauma through peer rejection, and being undiagnosed as autistic meant that when alcohol was present I would drink it,’ says Lewis.

‘It’s essential that as a profession, we reframe our perspective on what addictive behaviours actually mean,’ she says. ‘For example, some behaviours seen in neurodivergent clients can come across as “avoidant” or “challenging” to a therapist, when in fact they’re a different way of processing things. An understanding of a client’s potential neurodivergence could change everything regarding how their experience of addiction is explored in therapy.’

Misdiagnosis

Marina McAdam is an autistic US-based addiction counsellor, recovery coach and adjunct professor of education specialising in neurodivergence. Some of the barriers she has noticed working specifically in an addiction treatment setting include a lack of understanding of the tailored support needed for neurodivergent people. ‘For example, undergoing therapy in large groups, such as 12-step programmes, may be anxiety-producing for clients and lead to more addictive behaviours as a coping mechanism for the anxiety,’ she says.

Many of her neurodivergent clients have experienced misdiagnosis, says McAdam. ‘Not being diagnosed correctly, they have no access to treatments and medications that can help them with everyday functioning, potentially affecting employment,’ she says. ‘A lack of accommodations and knowledge from employers potentially lead to work termination. These negative experiences of being undiagnosed or misdiagnosed, possibly with comorbid conditions as well, in conjunction with not being accepted for who they are, being criticised and judged, and lacking the ability to lead a financially independent life, may cause enormous trauma that leads to addiction. It is not helped by the fact that many therapists whom my clients have seen previously are not trained in neurodivergent issues and presentations.’

Evans agrees that misdiagnosis is a problem for neurodivergent clients and typically exacerbates their distress. ‘I have noticed that some neurodivergent clients have been through many assessment processes with mental health services, often receiving multiple diagnoses, including a personality disorder or bipolar disorder, before they finally see a practitioner who introduces the possibility of neurodivergence, which most immediately identify with and feel describes their difficulties,’ Evans says.

Accessibility

In terms of what we as therapists can do to make addiction-specific therapy accessible to neurodivergent clients, McCarron says this client group may need extra accommodations. ‘For example, they may benefit from more specific instructions on where to go in a new counselling or therapy space, such as visual images of the area, and details on how the group runs. Where possible, it is a good idea to offer a buddy to go with them. Also, we can offer accommodations such as allowing neurodivergent clients more time to settle in before having to share their “life story” in a group setting,’ she says.

Some neurodivergent clients need more space to process their thoughts before they feel confident to answer questions, she says: ‘Round robin exercises are the ‘Social anxiety can be a causative factor for autistic individuals self-medicating with alcohol and substances’ the job of a counsellor to diagnose a client’s neurodivergence, but signposting can definitely support an undiagnosed neurodivergent client in their counselling journey,’ says Evans. ‘At the rehab facility where I volunteer there have been many clients whom I have suspected may have an undiagnosed neurodivergent condition. My role is to use my knowledge and experience to support a client to seek a formal assessment, if the indications are they may be neurodivergent, and if they feel an assessment may be helpful.’ For counsellors and psychotherapists working in addiction services, educating ourselves about the undeniable links between addiction and neurodivergence is key. Signposting a client to suitable services could positively affect their recovery journey, and even save a life. *Names and identifiable details have been changed worst for this – feeling put on the spot does not help with being able to think, it just immediately puts you in the “amygdala hijack zone”. Some neurodivergent clients may for example blurt something out without thinking, but we need to reframe from this being a dysfunctional behaviour to one that’s part of their neurodivergence, and help the client understand it.’

Evans agrees we must do better in acknowledging that human brains work in different ways. ‘In my experience, the demands of a residential setting combined with groupwork can be immense barriers to neurodivergent clients succeeding in rehab,’ she says. ‘Issues such as noise sensitivity, the unpredictability of engaging with a large group of new people, alexithymia (difficulty recognising emotions), the overwhelm of an unfamiliar routine, together with expectations of exploring feelings in a group, can often lead to an early exit from rehab. Also, for an autistic individual in rehab who needs quiet time alone to cope with overwhelm, the encouragement to engage with a group and not self-isolate can be counterproductive to their wellbeing.’

In individual therapy, neurodivergent people often cite feeling very comfortable undergoing video-based counselling. A recent scientific review on ‘cyber health psychology’ and addiction found mobile health has many ‘benefits and advantages’ for therapist and client, typically when utilised with a ‘parallel psychotherapy path’.²⁰

McAdam says online therapy can be significantly less stress-inducing for socially anxious clients. ‘For example, navigating the journey to an unfamiliar counselling room and the avoidance of excessive socialisation in reception areas and on public transport. Individuals and organisations offering addiction counselling or therapy are encouraged to offer telehealth-based provisions for neurodivergent clients where possible,’ she says

Signposting

The issue of whether counsellors should flag up the potential for neurodivergence to a client they suspect is autistic, or has ADHD, remains complex. ‘It is ethically not the job of a counsellor to diagnose a client’s neurodivergence, but signposting can definitely support an undiagnosed neurodivergent client in their counselling journey,’ says Evans. ‘At the rehab facility where I volunteer there have been many clients whom I have suspected may have an undiagnosed neurodivergent condition. My role is to use my knowledge and experience to support a client to seek a formal assessment, if the indications are they may be neurodivergent, and if they feel an assessment may be helpful.’

For counsellors and psychotherapists working in addiction services, educating ourselves about the undeniable links between addiction and neurodivergence is key. Signposting a client to suitable services could positively affect their recovery journey, and even save a life.

*Names and identifiable details have been changed